My name is Heather and I have Ankylosing Spondylitis (AS). I was officially diagnosed with AS when I was 23. I first started experiencing pain in my sacroiliac (SI) joints around the age of 18. I noticed that I couldn’t get up off of hard flat surface when lying down without stiffness and shooting pain in my left SI joint.
To diagnose the pain I went and saw a rheumatologist at the local military base. Note: My healthcare was provided by the military because my father is 100% disabled and retired from military. The doctor took x-rays and was not able to find anything on the x-rays, but said based on what I was experiencing that I probably had arthritis. I didn’t receive specific diagnosis to what type of arthritis I had, nor any medication for treatment.
The next couple of years I just dealt with the pain. It was not constant and was typically brought on after standing on my feet for long period of time. This became problematic for me because I was an assistant manager of a large movie theater. The shifts became grueling, because I would be on my feet for between 5-10 hours. There were days that I experienced such pain in my SI joints that I could barely walk to my car in the parking lot and would be in tears.
Over this same time period I was attending college three or so hours from home. I started to notice that on the weekend drives home sometimes I couldn’t turn my head to see my blind spots in the car. My neck was stiff and I experienced pain up and down my neck and shoulder.
After college when I had my own health insurance I went to see another rheumatologist for treatment of my arthritis. I was put on oral steroids and again not told what type of arthritis I had. I am not sure if the steroids ever worked for me. I didn’t like side effects of them, so eventually stopped taking them. After another year or so I decided to find another rheumatologist.
I started seeing Dr. Eric Ruderman at Northwestern Memorial Faculty Foundation in Chicago. I finally received a diagnosis of AS when I was 23, five years after I saw my first rheumatologist for pain. The arthritis in my SI joints was now visible on my x-rays. My doctor told me I was lucky, because it can take 10 years to be accurately diagnosed.
Fast forward to now. How has my life changed since I have been diagnosed…..I realize that I cannot have a job where I stand all the time. I am also coming to realize that stress and lack of sleep causes my arthritis flare up. I have also been diagnosed with iritis, uveitis, dry eye syndrome, asthma, hypoglycemia, chronic rhinitis/sinusitis, IBS, low vitamin D, low iron, and plantar fasciitis. I have about 8 doctors that I see on a regular basis. I have more health issues then someone my age should have and some people think my illnesses are in my head, because you cannot see my illnesses on the outside.
I know more about AS then most doctors out there and realize there is so much research that is still required about this autoimmune disease. I try not to take a lot of medications, however my dosage and number of meds keeps increasing. I am currently taking 7 prescription medications plus 3 dietary supplements on a daily basis. I find that I get some of the best relief from pilates and yoga. I currently take voltaren for my arthritis and omeprazole because the voltaren messes with my stomach. I now also have to have my liver and kidney functions monitored regularly because of long-term usage of the drug. In the course of my treatment I have also tried acupuncture and cortisone shots (shoulder and SI joints) to get relief from pain. The progression of my arthritis has been as follows: SI joints, neck, shoulders, feet, and upper back
I worry about what tomorrow might hold:
- Will I be able to get health insurance? AS is considered a preexisting condition and those of us with AS are not eligible for healthcare in the private insurance market; therefore until the healthcare law is enacted (praying it is not repealed) I need a job with benefits or get married to someone that has a job with benefits.
- Will I be able to find a job that is accommodating when I have flare ups and that offers flexibility for me to go to doctor appointments?
- How long will I be able to keep working?
- How much would my AS affect me if pregnant or post-pregnancy?
- What will the quality of my life be in another 10, 20, or 30 years?
Overall I try to keep a positive outlook and enjoy life in the now, while keeping healthy. I take time to travel extensively internationally and domestically while I can still physically maneuver relatively easily. I am not sure what tomorrow will hold for me, but I will do my best to endure. I think I draw my strength from growing up with a father that is 100% disabled and lost a limb. If he has endured, I know that I can. I hope the telling of my story will help other people dealing with AS or educate those wanting to learn more about the disease.
Chicago Illinois United States of America